The 7th PANDAS/PANDAS UK Awareness Day is on 9 October 2017 - click 'Resources' tab for further details.
PANS is an acronym for Paediatric Acute-onset Neuropsychiatric Syndrome which encompasses PANDAS (Paediatric Autoimmune Neuropsychiatric Disease Associated with Strep).
The defining feature of this condition is its immediate onset. One day your child is well; over the next week or so they become burdened with conditions such as severe anxiety, ocd, tics, eating disorders or trichotillomania (hair pulling).
- There may be sudden onset of verbal and/or motor tics, a constant need to wash hands or ask the same question over and over. See Yale Brown Scales - OCD or Tics
- Your child may become irritable, aggressive or develop oppositional behaviour.
- A child who was once not afraid of thunder and who liked insects may become terrified of both.
- Separation anxiety may occur, along with school refusal. Handwriting may deteriorate.
- Sensory issues - hearing, touch, sight - may become a problem and your child may find it difficult to wear clothes and not want to be hugged. Bright light and temperature changes may upset him/her.
- Hyperactivity may become evident and/or tiredness or painful joints.
- Emotional lability or depression may develop.
Children with PANDAS/PANS change, almost overnight. This is an autoimmune condition and if (as believed by some) antibodies attack the basal ganglia area of the brain they cause inflammation and changes in behaviour may
Can anything be done? Brilliant researchers are making headway, but as Susan Swedo only defined this condition in 1998, things are still in their infancy. Antibiotics, IVIG or plasmapheresis are thought to help in some
cases but this needs to be discussed with your doctor.
Where can I find a doctor to help me? I am hoping to build a list. There are some great doctors in the States, but sometimes travel may be difficult for children with PANDAS/PANS. If you have received good help from someone, please go to my contact page and let me know the details so that others can be helped too. We need to share the names of good health practitioners. I have attached a link to a page of doctors who others have used and found helpful, but do call them and find out first that they are right for you.
Meanwhile, please bear with us - this site is new and will expand as we travel our own PANDAS/PANS journey.